How To Handle Having A Caregiver

Here’s the thing when I typed “how to handle having a caregiver” into google I thought that it was gonna say things like letting someone helping you doesn’t mean your not an adult or they aren’t babysitting you and that this is needed those kinds of things but no this is what I found…

The articles none of them were pointed at the person who was sick, I find it so hard to have a caregiver to let someone help me.

I’m an adult and have to have someone come here and watch me?

As of 2018 I’ve become someone who has a caretaker, and a respite care worker. Two people that watch me most of the time. I don’t always know how to handle being cared for.

From the time your born you learn how to be independent. We learn to make sure to cry when we need something, we learn that being nice and smiling can help. That we learn to crawl to get something our selfs. We learn to walk so we can do things on our own.

We go to school so we can learn we do chores so we can be able to clean our homes when we are adults.

We learn to go use the to shower how to cook how to drive so we can do things all by ourselves.

As I get the blessing of living longer and longer I’ve been needing more and more help.

My respit caregiver is kind, and she helps me by really truly is here by just being here. With the diseases I have, it can change fast. I could hurt myself if I had a seizure if I had a a reaction. And so on so on.

I am learning to find this as a way for me to help someone have a job, to know this is ok

I’m learning to look at independence differently. To know I’m still an adult. I still need help but it doesn’t mean I’m lazy.

So how to have a caregiver- be kind, tell them if you need something even if you could possibly do it yourself but you know you shouldn’t, tell them thank you and be kind to them, if they make you feel uncomfortable say something to either them or the other people in your life. Think about them like the nurse on Monk solving crimes and someone walks around and helps him he’s still an adult. (We all know Natalie on Monk was way better then the first)

It’s not lazy. It’s not crazy.

Be kind be good be love

Shayweasel is sitting down

Be jealous of all this..

I’ve had a few people tell me they are jealous I can stay home and watch tv all day! Or that I’m able to read all the time! To be able to eat a bunch of calories and not worry about gaining weight or that I’m so skinny! But honestly if your gonna be jealous of something here

I’m very sassy!

I’m beautiful!

I’m creative!

My parents are steve and Sherri!

My niece Rory knows more then you do!

My niece Wavey is a very fiery red head!

I have twin sisters who are way more beautiful then any other twins!

My nephew Carson is very excitebul

My best friend Jazzy can tell you everyone in our favorite tv shows names!

All dogs love me!

I know every episode of the walking dead! And I’ve seen it twice!

My best friend Macy is one of the funniest people I know and has a great heart!

My sister Stephie is selfless and kind and always gives her helping hand on anything!

I am very good at finding my way around!

I can tell you weird facts about anything! Facts you never wanted to know!

My sister Sam is a quietly loud person with a heart of gold and kindness flows out of her!

I’ve been to Washington state during a toxic stuff released into the air be jealous of that somehow..

I have amazingly wonderful family!

I’m very good at sitting and talking!

I’m a great cook!

My friends are amazingly fab!

My best friend Dara is amazingly sweet and the best gift giver I’ve ever known!

My mom can paint wonderfully!! She can sing more amazing then anyone I know!!

My papa is an amazing reader singer and funny and wonderful at speaking!

My sister vana is super smart she always keeps herself doing things for others!

My brother Sean is one to ask if you have any questions about sports and cares so much about everyone no matter what!

My best friend Josephine can talk just as much as me!!!

This is what you should be jealous about! Be jealous of these friends these family theses facts theses laughs!!

Be jealous of all this!

Shayweasel isn’t jealous!

Why weekends are hard…

I hate mondays Fridays, I know what? Shay? How can you hate the weekend they are fantastic. One let me say I haven’t always hated them. And I still hate Thursdays more than I hate Fridays but for me I hate the idea of the weekend, that you have to go out and hang out with friends or if you don’t have plans then you are just going to die alone or become a cat lady.

I mean its not a big deal. I have been a nanny and my idea of a friday night was the parets going out and me making like 100 dollars thats my idea of Friday for a long time and when I wasn’t working I would sit in my living room watching TV shows or movies or I would be on tumblr for like nine hours.

So I don’t get where this you have to be busy on the weekend sleep in and go out and party or go to church on sunday. I don’t get it. I want to do what I do on a normal day. To me the weekend ends up normally being really boring and I don’t enjoy it because everyone is saying “Oh my I’m doing blah blah..” I mean even if I had a lot of friends who wanted to do stuff the weekend wouldn’t be when I wanted to hang out it would most likely be a random day.

But I want to say since my chronic illness kicked in over drive, the weekends end up being really hard on me. I feel like I am missing out on a part of live that I never knew I needed but I don’t need it. You might be someone in school or work the weekdays and when you get a free day its like fantasticness but to me it sometimes end up making me sad because I’m like I don’t have energy to do anything and its not going to change just because its the weekend sometimes I have good days but they are normally on a weird day like Tuesday and I get to make breakfast and go to the store, but my body doesn’t know that its the weekend. It does what it wants to.

So why am I telling you all this? Because I know that people with chronic illnesses might feel the same way, so if you know someone who has a chronic illness go over and watch a movie with them and don’t try and make them talk to much or anything just let them be but be there with them. It means a lot when you get a friend who can sit in the same room on their laptop as you and not talk but will say something like did you see this?

Or when we need to rant about shit you listen. Its hard because we might seem whiny but it really is that some of us aren’t around people. Don’t talk to people, and a lot of us don’t get to see very many people at all or only talk to people online.

The weekends are hard because its not just we can’t get out its that no one wants to stay in and no one wants to hang out with you.

When you are diagnosed with a chronic illness you normally lose half your friends right off the bat and it kills small parts of you. So yes, if you want to help make weekends better then just be there and say what’s on your mind.

My name is ShayWeasel and this has been a weirdish public blog post…

#spooniestrong #weekendssuck #fuckit

The Medical World Has failed

This post should really bother you, if it doesn’t….

 

The medical world has failed horridly for people with chronic illnesses, they have failed us. I as someone who has multiple chronic illnesses I know. Because as the doctors talk to you like you are either stupid or like you are suppose to understand everything. I have health issues and the doctors they act like I’m suppose to put up with being in pain and being sick because they have no fucking clue how to live with chronic illness, when I go to the doctor and I say well I had one good day last week and then I say “I only threw up twice all day.” Yea thats a good day, I’m fed up with doctors treating people with chronic illnesses like its our fault, and oh they do.

in the medical world you sometimes have to wait nine weeks to nine months to a few years to get to see the only doctor who has any clue what they are doing, people are either misdiagnosed or they are called insane and sent home, or better yet put somewhere like an mental hospital when they have a physical illness that needs to be treated by a doctor who will listen.

Living with an illness is hard but personally what’s harder is hearing the words “It is all in your head” “You are already on the treatment” “the medicine I put you on is suppose to help”

My sarcastic answers to these questions are much easier for me to say then really dealing with another doctor and another treatment that didn’t work. The medical world is not helping because out of the 7000 rare diseases there are only 200 that have cures and most of the rare diseases don’t have treatments, theses diseases are unknown and so most of them are undiagnosed so you have a ten year old child whose body parts body out of place and everyone just says she is loose jointed and then they go on and act like this is fine and then when she is 15 her body hurts and other weird things keep happening but what happens when that same girl gets in a car crash and she is rushed to the ER and she is talking and all is fine but then she dies her heart burst because she has EDS and it wasn’t on any of her paperwork and she didn’t even know, because no doctor put all the pieces together, what happens then?

They die, okay lets go back a little, sometimes doctors want to put us into small little boxes when in reality some of us have multiple rare diseases, and we don’t fit into the boxes of us, well the people with EDS might be able to fit into small boxes but not health wise. The medical world needs to admit they failed the people with chronic and rare disease.

It needs to change, we don’t need to be treated like we are insane every time we walk through the door, my stomach when I throw, I just throw up like a gush of water, if you didn’t want to know that then I’m sorry, but it seems the doctors they don’t want to know either, because as soon as they come into the room, they have made up their minds, when are blood test show we are normal, maybe you aren’t doing the right blood test, maybe its you doctors, because every chronic illness person thinks its there fault, and I don’t know where doctors got this idea that everyone is making up their illnesses, but they aren’t. Maybe five people are but most of them aren’t and you need to deal with the fact that maybe you doctor have no clue what is wrong but do tell me that you know something is wrong, tell me you believe me, even if you can’t help me, just be honest with me and say you can’t because as the person with the illness, I’m not just trusting you with my illness, I’m trusting you with my life.

We have illnesses, we aren’t fakers, we are sick, so dear medical world right now you are failing the people with chronic and rare illness/diseases, and we know that we may never get better but we want some help. So please help us.

  As always I might be a spoonie for life but I just hope I’m not always in pain.

Fantasticness of Stress

Some people handle stress fantastically, I have never met these people but I hear they are alive and well. I personally handle stress like someone has set me on fire while someone else is shoving rose coloured monkeys in my house which is full of bees. In simpler words, not so fantastically. You might think well maybe you should just learn to handle things better. Some things I handle well. Like death, and sickness, and being in hospitals, just being there for anything. I handle thoses things well.

But things like going into the bank to talk about money, total bee fest. And your boss yelling at you total rose coloured monkeys. I just don’t understand people. Me and humans don’t understand each other. Now give me a cute dog and life is all easy and good. Or  a small child. Things in those things are easy, but other times not so much. So maybe my problem is not stress maybe my problem is people. Huh, this could possibly be very true. I have panic attacks rather easily, or use to.

I haven’t had a panic attack in a while and I’m doing pretty good.. Anyway back to what I was saying is that stress and humans are a part of living a good and reasonable life. Its not easy but its a life. And its one that is worth living. Even through stress can happen daily and things badly can happen at any moemnt. People die and get ill and have bad days and things happen.

So how do you personally handle stress? I might have a panic attack or get mad but its strange, its when I started letting myself be stressed, feel the feelings I need to feel. When my grandma Rosa past a while back. Myself and my parents had gotten to my grandmas house at 4 in the morning and my aunt who took care of my grandma was there at the house and my grandma was at the hospital type place and at 6:45 am we got a call saying they had called 911 for my grandma so on less than 2 hours asleep we went to the hospital and I was stressed and tired, my grandma past that day it was a long emotional day, but how I handled it was strange. I just let myself feel sad. And feel the joy that she was in no pain. I let myself feel the happiness that I was there with her when she past. That I was there when she went from being here to being home. I was happy and sad and felt overwhelmed. But I let myself feel theses feelings and knew that it was okay, to feel this way.

That’s what I think is important in stressful life happenings, so if you lose your job, and if you let yourself feel the emotions of losing your job, the anger and the annoyness and the life over-ness and then tell yourself that you go this. I think thats how stress should be handled and thought about.

That no matter what you don’t know about life, we can live and learn to handle new things, life changes in the flash of a light that can send you into a seizure or it can send you to help someone or it can cause you to feel that the whole life is a hopeless place of worry and horror. But no matter how horrid things seem, learn from the stresses of life and move on. Just keep moving, stop for only seconds and remember, do not forget what has happened to you.

It might be the horror but let yourself remember the wonderfulness and beautifully fantastic things that happened that day in the sun or rain or when you fell and everything changed. Let yourself know how important everything in life really is. No matter how stressful we live life and no matter how easy center times can seem everything won’t always get better but we can make ourselves make things better. So I believe stress is an overload of emotion, don’t forget to feel the bad emotion and the good emotion. Let emotion in. AND feel it…

What to know…

I want to know… But really is what to know, I need to stay on a need to know basics but sometimes is more of a what to know basics,

I know when I go to the hospital they are not on a need to know basics they are on a what to know… what happened.. what are you allergic to… what is wrong?… what kind of pain?? what to know is sometimes a weirdly important part. Its the small things that mess everything up. Its when you want to know something and then learn that you don’t really need to know it. But every now and every then, you learn what to know. And sometimes its when that person tells you what to know that you go… and take that deep breath and you know, that the air is clear and that the pain is right in the heart.

What to know about me… I’m not sure, I barely know me. I have only lived with myself for well about 23 years, I have lived outside the womb for 22 years but I have been alive for 23 years, I like the air I breath even though my lungs believe I need help sometimes. And my body for some reason believes that most foods and most things that you can find outdoors are evil so therefore attacks them, is what makes the world one kind of place that I do highly to the most amazing enjoy.

What to know about Shannon DeRose, is that its just who I am. I am not the enjoyer of a small plant of random food. I ask way too many questions and I normally fall into trouble for this. I would not say I am an easy going person. I like who I am, and everyone else is learning to deal with who I am.

Now what to know about life is that there isn’t a place for everyone but I believe that we can make places for ourselves. We can make everyone have a place, but I think some of us come out with a whole lot of craze and we have to make a place in this world for us, and people who aren’t like us.

   What to know is that we can make places for us. We have to try. And never quit and sometimes we have to say behold….What we need to know is up to us…